The dad who never said die
When John Crowley learnt that two of his children had a rare, terminal disease, rather than accept the apparently inevitable he embarked on a race against time to discover a cure. Now his extraordinary story has been made into a film, reports Benjamin Secher.
ON the day filming starts at Clackamas River Elementary School, in the tiny Oregon town of Estacada, it feels as if the entire population of 2,855 -- along with some of the more starstruck residents of the neighbouring towns, Damascus and Boring -- has gathered at the gates. The residents of this little logging community at the foot of Mt Hood are determined not to let the moment pass them by: some clutch autograph books, some binoculars, others just stand and stare, in the hope of catching a glimpse of Harrison Ford or perhaps his co-star Brendan Fraser.
Inside the school hall, filming is under way. A child actress dressed as a mermaid speeds on to the stage in an electric wheelchair, does a graceful figure-of-eight around a boy in an octopus suit and the poor kid who got cast as an oyster, then breaks into a relieved smile. She stares out across a sea of proud, applauding parents to catch the eye of Fraser, cast in the role of her father, John Crowley.
The camera zooms in on his face: Fraser is a giant of a man, 6ft 5in and built like a quarterback, but his eyes are full of tears. "Not much acting required," he says afterwards. "Seeing kids do stuff like that, it's delightful."
Cinema has a habit of asking us to believe in incredible characters. Crowley is no exception. The hero of this new film, Extraordinary Measures, is a brilliant businessman who, at the age of 29, learns that two of his three infant children suffer from Pompe disease, a rare neuromuscular disorder that will, most likely, kill them both within two years.
Instead of accepting this bleak prognosis, Crowley goes into partnership with an eccentric, exceptional scientist, Dr Robert Stonehill (played with gruff charm by Harrison Ford), and founds a biotech company to develop a treatment for his children's illness. A little over a year later, the company has hit on a promising new therapy and is bought out by a pharmaceuticals giant. Less than two years after that, Crowley's children -- and other Pompe sufferers around the world -- are being treated, and their symptoms brought under control, by a drug Crowley played a role in creating.
What makes this story all the more incredible is that it is true -- based on the experiences of a man Harrison Ford describes as "the most can-do guy you'll ever meet".
John Crowley was born into a close-knit Irish Catholic family in Englewood, New Jersey, in 1967. Shortly before his eighth birthday his father, a policeman, died on duty after a faulty exhaust pipe caused his patrol car to fill with carbon monoxide. "Being seven years old and waking up one morning to find your dad's not there any more -- that's the kind of experience that shapes you," Crowley says during a telephone call from New Jersey. "That was the first moment that really changed my life."
The next came in 1998, after Crowley (the first in his family to receive a college education) had racked up a degree in foreign service from Georgetown University, a law degree from Notre Dame and an MBA from Harvard, and secured his first job as a financial consultant. By then, he had also married his high-school sweetheart, Aileen, and they were living with their three young children, John Jr, Megan and Patrick, in a four-bedroom ranch just outside San Francisco.
Crowley still recalls, with the stubborn clarity of a truly awful memory, the moment on the afternoon of March 13, 1998, that changed everything. A doctor informed him and Aileen that Megan, then only 15 months old and displaying a lack of upper-body strength that had seen her referred to a hospital for tests, suffered from Pompe, a fatal condition that prevents the body from breaking down glycogen, leading to muscular dystrophy and leaving the heart and other vital organs dangerously swollen. Within days they would learn that baby Patrick, born only a week earlier, had also inherited the genetic mutation that causes the disease.
"I didn't know what the hell Pompe was," Crowley says. "I'd never even heard of the word. It was a classic 'wait a second, this sort of thing isn't supposed to happen to us' moment. You go through shock, grief, denial, anger. When we got home to Megan that night, I could hardly bear to look her in the eye. Aileen went to bed upset but quiet, holding Patrick in his little blanket. I just got on the computer and started searching the internet for anything I could find about the illness. I printed out a bunch of academic research papers then went in and woke Aileen at 2am and was rambling like an idiot, showing her this stuff. She said, 'What are you talking about? What does this mean?' And I said, 'It means we've got hope.' And that's when we started to say, 'OK, let's see what we can do about this.'"
"I didn't know how to make a drug," he continues. "I didn't know how to treat a patient. But I did know -- or at least thought I knew -- how to write a business plan and start a business, and that was the only shot we had at saving our children's lives."
In 2000, Crowley founded Novazyme with Dr William Canfield, an Oklahoma-based biochemist whom he had met at a Pompe research conference two years earlier. Canfield had been independently working on a radical enzyme therapy for Pompe for a decade but, until Crowley came along, he hadn't been granted sufficient funding for a clinical trial. "We were a young group," recalls Crowley, who took out a second mortgage on his home to help finance the new venture. "Of the 120 people in the company only two were over 40, and I was the 32-year-old CEO. We didn't know what we were doing, we just made it up as we went along. We were really good at raising money and we worked 18, 20 hours a day, seven days a week. What we lacked in experience we made up for in passion."
Meanwhile, Megan and Patrick continued to deteriorate. Both were confined to wheelchairs, lost the ability to breathe without ventilators, and, in time, their facial muscle control deteriorated to the extent that they could no longer muster a smile. Occasionally one or other child would succumb to some sort of crisis -- a bout of pneumonia, cardiac failure -- that brought them perilously close to death. Time was running out, but rather than spending those precious days at home with his children, Crowley was caught up in the quest for a treatment to prolong and improve their lives.
That terrible gamble paid off on August 8, 2001, when Novazyme was bought for $137.5m (€100m) -- and Crowley taken on as senior vice president -- by Genzyme, the world's third-largest biotechnology giant and the company that within 18 months would have a Pompe medicine ready to treat Megan and Patrick Crowley. Without it, they wouldn't be alive today.
"If I knew everything I know now, I don't think I would've taken the risks I took," Crowley says.
"I can see now that much of what we did wasn't financially prudent or scientifically sound. I didn't even know, setting out on this search for a treatment, that it would be possible to succeed. I really didn't know. I wanted to believe. But more than anything I just didn't want to get years or decades down the road and regret not having done something. I wanted to know, for our peace of mind and the peace of mind of everybody who loved the kids, that -- even if things turned out badly -- we had done everything we could, everything humanly possible. I just did what I thought I had to do."
Geeta Anand, a Pulitzer Prize-winning journalist, was the first to introduce John Crowley's remarkable story to the wider public, in a 2001 article for the Wall Street Journal and later in The Cure, a book on which the film is based. When Harrison Ford came across the article he spotted in it the potential for a film script. "I found it to be a very compelling story," he says. "I thought if we could wrestle this into the shape of a movie, we would be bringing a story to the screen which would enrich people's lives."
Ford, who is an executive producer of Extraordinary Measures as well as acting in it, took the idea to the producers Michael Shamberg, Stacey Sher and Carla Santos Shamberg -- a team with a better track record than any in the business for making films "inspired by a true story", films such as Erin Brockovich and World Trade Center. They in turn approached the Crowleys to seek their permission.
"When Hollywood started calling within a month of Geeta's article we told them at first, 'I don't think we're interested in doing this,'" John Crowley says. "Michael, Stacey and Carla seemed very sincere, and they had enormous credibility and experience, but still, I told them, 'Look, if I sign my life rights away that's it -- you can make a movie about me and say pretty much anything you want.' It took us many, many months to get comfortable with the idea. Like it or not, this film is how the world will know our family. And thankfully we do like it. I think they did a very nice job."
"We like to tell true stories," Sher says, "and what we've found in developing them is that what actually happened is always more interesting than anything you could make up." Which isn't to say that the film remains utterly faithful to every aspect of the Crowleys' lives. Far from it. "It's a very complicated story and we boiled it down," Sher admits. "We threw out a lot of the stuff we didn't need."
Yet while the film compresses the true sequence of events, and dispenses with a number of the story's key players, the producers were adamant that a certain level of scientific accuracy remain. "The labs you see in the film are set up just like real labs, all the equations shown are correct," Sher says. "We've all been boning up on our glycobiology." They even sent Ford and the film's Scottish director Tom Vaughan on a crash course in biochemistry. "For three hours a bunch of scientists gave Harrison and me a big PowerPoint presentation of pure science," Vaughan says. "At the end we both just looked at each other and Harrison said, 'We're gonna do some drinking tonight.'"
Michael Shamberg explains that Vaughan, 40, was chosen for the job over a number of more experienced directors because his 2006 University Challenge comedy, Starter for 10, had persuaded them that he knew how to handle an emotional story. "The Brits are very good at keeping things from being sentimental," he says. "They give you feeling without being sappy about it."
Perhaps the greatest liberty the filmmakers took -- other than casting the 6ft 5in Fraser to play the 5ft 6in Crowley -- was in the creation of Dr Robert Stonehill, the pig-headed but ultimately big-hearted researcher played by Harrison Ford. Ford describes the character as "a composite of a number of different scientists who played a part in the real story".
A crew member on set puts it more bluntly: "He is an amalgam of every scientist asshole who tried to stop Crowley saving his kids." In any case, Stonehill's stubbornness and initial reluctance to respond to the urgency of Crowley's plight conveys successfully that the road to the treatment was far from smooth.
"Biotech is two steps forward one step back every day," Crowley says. "If things were going great it was a complete high. I felt totally elated because not only were my job and my career and my potential financial future looking better, but I was also coming that much closer to saving Megan and Patrick. So the highs were higher than in any job you could possibly have. But equally the lows were about as low as you could get."
Crowley pinpoints the lowest point in the whole endeavour as a particularly dark period, in the second half of 2002, when Genzyme's new treatment started undergoing clinical trials but he couldn't find a way of getting his own children on to any of them. The company's board had decided that, with the medication in extremely short supply, the initial trial would be carried out only on patients younger than a year old, who would require the smallest doses. A second trial was then instigated for children under three. Patrick and Megan Crowley, then four and five, did not qualify for either.
"I'd see scenes on television of parents of a Pompe patient in Italy who'd chained themselves to the front of a hospital and had the bishop of Naples show up and crowds chanting at the hospital, 'We want the drug.' And then I'd be instructed by my boss that Genzyme's CEO had given us the go-ahead to send the drug to these people," Crowley says. "So I'd pack it up on ice and put it in a FedEx box, and the next day on TV I'd see a motorcade going to that same hospital to escort the medicine to save a kid's life. Of course, part of me was thrilled to save that little kid in Naples, but part of me was torn apart that I couldn't give it to Megan and Patrick."
After what seemed like an interminable wait -- and following Crowley's resignation from Genzyme to pre-empt accusations of a conflict of interest -- Megan and Patrick were finally accepted on to a clinical trial in January 2003, becoming the 27th and 28th patients in the world to get the company's new enzyme therapy. They still receive it every other week, and continue to respond well.
"Their organs are now healthy -- you couldn't tell them from the organs of kid without the disease, which is a remarkable change from seven years ago," Crowley says. "In terms of skeletal muscle strength, the disease has progressed much more slowly than it would have without the medicine, but they're still very fragile: still in their wheelchairs, on ventilators."
Asked what his future hopes for his children are, Crowley pauses. "More than anything I just want Megan and Patrick each to live as full a life as they can," he says. "We are now in uncharted territory. Kids have never lived this long with this disease."
As Extraordinary Measures makes clear, with its scenes of raucous birthday parties and family outings, one of the Crowleys' chief achievements has been to maintain for their children as ordinary an existence as possible. Despite their significant disabilities, both Megan and Patrick continue to attend state school. And Megan, who has just turned 13 and according to her father is "totally excited about 'her' movie coming out", really did once star as a mermaid in the end-of-year play.
"On a typical morning," Crowley says, "we wake up and there are the two Jack Russells running around the house. John Jr, who has ADHD, will be tearing about too, in need of his morning dose of Ritalin. And Megan will be knocking chunks of plaster off the walls with her 300lb wheelchair. Sometimes, on those mornings, you just want to bang your head against a wall," he laughs. "But sometimes, more often than not, you just step back and say, 'You know what? We've got another day together. And that's OK with me.'"
Extraordinary Measures opens on Friday